Dennis “Tito” Esposito was a fun-loving, caring 26-year-old with a huge smile and a rock ’n’ roll heart. Nicknamed “Tito” after a classmate at Chaminade High School with a lisp repeatedly mispronounced his last name, friends knew the 6-foot-plus gentle giant as a larger-than-life personality who loved music and was a gifted guitarist. Often they’d listen to him rock out on one of his many guitars at the apartment he shared with his brother in Mineola. Tito also loved video games, comic books and role-playing games.
On May 31, 2000, Tito woke up late for work. Since the bathroom showerhead was broken, he filled the tub and hopped in for a quick bath. His brother found his body about an hour later. Tito had had an epileptic seizure and drowned.
Tito was just one of an estimated 3 million people currently living with some form of epilepsy in the United States, according to the Epilepsy Foundation, a national nonprofit with affiliates across the country, its largest in Garden City. That figure is growing, with about 200,000 new cases diagnosed each year. One in 10 adults will have a seizure in their lifetime.
But there are new reasons for hope. Recent scientific breakthroughs offer new possibilities for the treatment of epilepsy. Earlier this week, Carnegie Mellon University announced researchers had identified a new anticonvulsant compound with the potential to stop epilepsy’s development.
On LI, more than 35,000 people are affected by seizures, says Pat Maher, director of development and community relations for the Epilepsy Foundation of Long Island (EFLI). As many as 3,000 Long Islanders develop seizures annually, she tells the Press. Maher’s department, which is funded completely by grants and donations, includes the group’s community education program, which teaches the public about epilepsy.
Epilepsy is a neurological condition that produces seizures. The seizures can range in duration and complexity, and be triggered by anything from flashing lights to head trauma. People who have two or more seizures are considered epileptic.
But there’s a lot of misunderstanding about epilepsy, says Maher. One of the biggest obstacles facing those with the condition, she explains, is the stigma surrounding it. For adults, this negative stereotyping can be especially destructive. It can result in everything from workplace discrimination to misunderstandings with law enforcement, she says.
“Sometimes they will go into a store, they’ll have a seizure and a storeowner will not want them back again, because they won’t understand,” explains Maher. “People have been accused of being drunk because maybe they’re staggering a little bit, but they’re really having a seizure.”
It’s this long-running stigma that contributes to those with the disorder to keeping it a secret, says Jennifer Colbert, L.C.S.W., director of clinical services at EFLI and a psychotherapist.
“It’s like they’re ashamed of it,” Colbert says. “People have diabetes. They don’t hide that fact they have diabetes. But they hide the fact they have epilepsy.”
The secrecy adds stress and anxiety, she explains, which fuels depression.
Colbert says another major concern among epileptic adults here on LI is driving. They must remain seizure-free for at least one year before they can be issued a driver’s license.
Colbert believes more awareness about the condition, all around, is key.
“There’s nothing to be ashamed of,” explains Colbert. “And other people can be very helpful and supportive so that these people don’t have to hide.”
To contribute to the Epilepsy Foundation of Long Island, go to http://www.epilepsyfoundation.org/longisland/.